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Growing up with Charcot Marie Tooth disease

Hey world, Timmy Dixon, here, just a regular guy, regular in my eyes, anyway. I’m a 35 year old, married man, with no children and 2 very sweet dogs. I live in little house nestled between two small mountains, a location people around here call a “holler”. I enjoy living a quiet, slow paced life in the Blue Ridge Mountains of Virginia. Virginia is so rich in country living, folk and bluegrass music and all the outdoors adventures I could ever wish for. Frankly I just couldn’t imagine my life being any more perfect.

At age 10 I noticed myself being a little different than all my buddies my age. It was becoming rather difficult to fall asleep at night. Laying in the bed my legs would ache with a strange sensation, like worms crawling inside them. I would often have my mom massage my legs. Massaging helped. My terminology was “I have the wiggles”. I just loved going to the public swimming pool in town but I started noticing my feet hurting me whenever I would climb up the ladder to get out. Fatigue would also bother me quite a bit but I always tried to keep up with my friends. One day, out of the blue, my parents decided a medical checkup might determine the origin of my health issues.

My doctor visit took place at Duke University Medical Center in 1988. I was just a little kid. I was excited about the road trip and this rare opportunity to drive through McDonalds and get a Happy Meal. After a thorough physical exam, the doctor diagnosed me as having a hereditary neurological disorder. My mother was in good health as I remember but my dad was a different story. My dad had a medical condition called Charcot Marie Tooth disease, or CMT. My medical condition was finally, officially diagnosed and all I needed was medicine to fix it, right? Nope. Charcot Marie Tooth disease is a hereditary neurological disease affecting the peripheral nervous system. People with CMT suffer a progressive loss of muscle tissue and touch sensation across various parts of the body. CMT is one of the most common inherited neurological disorders affecting 1 in 2,500 people worldwide. Relentlessly progressive, CMT has no cure.

We returned home. I went back to the business of being a kid and being a kid, never gave the doctor’s diagnosis a second thought. The occasional question came up regarding returning to the doctor for corrective surgery. Asking a kid if they want surgery is like asking a kid if they want go to school, or eat dirt. Not only no, but heck no. In my mind, I was fine and could manage the symptoms. I chose to hide the symptoms and stop complaining. The idea of surgery scares little kids. I was no exception. I decided not to share I suffered so much pain.

As the years progressed, the progression of CMT affected my balance and my reactions to certain situations. My legs and feet were completely numb. Secretly, this scared me A LOT. I noticed the shape of my feet changing more and more. Every month, my arches grew higher and the turn overs became more prominate. Turn overs are my definition of the constant rolling over of the ankles making it very painful to even stand.

I graduated high school in 1996 and began working in the local furniture factories. I bounced from job to job. Standing on the hard, concrete floors was very demanding, creating intolerable pain in my feet. In 1999, I began working for our local Walmart. I loved my job. One day I was working lawn and garden, loading some bagged soil for a customer. I heard a loud “pop” and immediately felt pains shooting up my leg. I went to the break room and removed my shoe, revealing a very damaged foot — beet red, hugely swollen, and bruised along the side and bottom. A doctor visit followed that evening. It seems I had suffered a stress fracture and was given some ace bandages and pain meds then sent home. Little did the doctor know my foot was breaking down on the inside. This injury forced me to resign the job I loved at Walmart and working any job shortly after that.

Countless corrective shoes and doctor visits over the next 5 years or so produced no relief or cure. Constant infections, repeated courses of antibiotics, and special diabetic shoes produced no results. And doctors. So many doctors. Doctors as perplexed as me – yeah, I’ve seen my share of doctors throughout my lifetime. Even so, I continued to live as “normal” a life as I possibly could. I never lived in constant fear of injuring myself. I never gave in to CMT. My first 30 years with Charcot Marie Tooth have not been glorious by any means but the pain and experience made me tough as nails. The debilitating pain and injuries suffered through living with CMT created more challenges than most people experience in an entire lifetime. This was a cakewalk compared to the next five years…

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15 comments

Mr. Timmy Dixon, you are far from “regular”! Thank you for sharing your story. You are not only smart, brave, well spoken, and fun to be around, I now see that you are a great writer as well! Your life and the way you live continues to inspire me. So many choose to let circumstances stop them from experiencing life and you do the exact opposite. The way you fight through each set back and come out on the other side a stronger and even more active person amazes me. I am grateful that Minda has such an amazing partner in life and that I get to call you my friend! Looking forward to our next adventure…hoping I can keep up on the mountain!

Thank you Timmy for sharing your story. You are one of the most brave and determined person I have ever known. As you share with us the things you’re going through and the surgeries you’re facing you always have such a positive attitude. I admire you for facing this disease head on and not letting it get the best of you. You are an inspiration to us all and I know God has you in his hand and has wonderful plans for your future. I pray God blesses you abundantly, if anyone deserves it you do.

This was very well written. I look forward to reading more of your story. I see much of my story in yours…I have CMT as well and so does my 12 year old daughter. I spent 25 years of my life feeling like something wasn’t right but not knowing what. Plus, if that’s a persons baseline “normal”, how does that person know they are different and what they experience isn’t normal. My dad was adopted so I didn’t know what CMT was or that it was in my family, from my Dad. He didn’t know he had it until my diagnosis. He knew his feet looked different and his balance was bad but he never asked questions prior to thst and still doesn’t. He doesn’t like talking about it.

I thought for moment you read my mind. Been there, still there, and still swinging. 39 yrs. and counting. What’s the alternative to fighting? Don’t know because we can’t and won’t quit as my heart is still beating there’s always some fight left. Keep writing for sure, very inspiring to others that may want to concede and be resigned to the idea of giving up.

So I too ` HAVE ‘ been misdiagnosed w/M.S. the past 16 years till I took a genetic test long story short/C.M.T./ Im still trying to get my mind around this culprit+however,You have giving me many answers and hope for the Future:)))

This is a wonderful story of endurance, determination, and a wonderful way of writing your struggles. At least for me, you have brought awareness of a disease I had never heard of before. May God bless you, looking forward to your updates.

I am touched by your story, so sorry you have had to bare these burdens….I see alot of your beautiful pictures…I have prayed for you many times with Louise Carrier…..you are very talented with your writing…hope to see more……Still in my prayers…Irma Gardner